A New Life with Myasthenia Gravis

My journey with myasthenia gravis started officially in 2018, but the symptoms started as early as 2017, by the time I started my clinical rotation in med school. Night shifts began to feel much harsher, my right eyelid got droopy and all my friends were noticing it. But no one suspected anything, or maybe we were just too exhausted to suspect anything. I got tired easier, but back then I thought it was just because of the lack of exercise in my lifestyle.

The diagnosis I ignored

Well indeed, healthcare workers usually make the worst patients. When my teacher diagnosed me with myasthenia gravis, I changed nothing in my lifestyle. All I could think about was that I should manage to finish school on time with my friends. But looking back, things already changed for me: I started to not comb my hair in the morning, the slurred speech at night, the fatigue, and how it was hard for me to climb stairs. Despite all, life was manageable, until 2020 came.

Ignore no more...

I started to feel joint pains in my knees and elbows, the pain became worse to the point that it was hard for me to sleep, and that worsens the myasthenia symptoms as well. Then the pandemic struck hard, work became much more hectic and the first few months were a nightmare. We had to keep working with so many unknown things and inadequate PPEs. All that together and things just spiraled out of control. I knew I was part of the high-risk population but backing out of work didn't feel like an option.

And worse came to worst, I got COVID, and every symptom got worse. It was very lucky for me that I didn't have to get intubated, but it took me almost two months to recover from the infection. But things just didn't stop, COVID really was a trigger for all things that were wrong to get even worse, all myasthenia symptoms just wouldn't go away and the joint pain got even worse. It took another 4 months for me to finally got an answer for the joint pain: polymyositis.

Finally, accepting my MG

I got started on high-dose prednisone, and I regained a bit of my daily life functions. I started working again, this time on desk work, but life was just unbearable. My life was only working my job, in which I couldn't do my best on it either because of the fluctuating symptoms. Some days I can see just fine but it's harder to breathe and I had slurred speech as early as 10 a.m. even with all my treatment regimens. Some days it's the opposite. After work, I can't do anything because the fatigue is too much.

All in all, I missed living a life.

Doing my best to accept this new life

This year, I'm trying to get my life back, and trying to accept that my life would be a life with myasthenia gravis (and a couple of other diagnoses I got along the way). I resigned from my work as the pandemic condition is starting to get better, and after adjusting my rest patterns, my muscle weakness is improving now, and I'm starting light exercises. Currently I'm struggling with double vision and droopy eyelids the most, but hopefully the symptoms can get better too with time and more adjustments.

It's June already, things are going slow, and I can't help but envy my friends who are getting on with their lives and careers. But looking at myself now, I'm quite happy that I can manage this far. Cheers for all of us living a life with myasthenia gravis, it's a grueling path but despite all the struggles, I hope we can all find our happiness :)